Appreciate your perspective David. But by the time any of the controlled studies provide something that provide any relief to me……well I am not going to be able to benefit from them. I have been following the controlled studies regimen for 5 years now. It has been a steady slide. Less than 2 months of following anecdotal stories and I…

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I started Dr. Hall’s laser protocol 12/5/24. I do not have empirical data to share yet, I have PFT scheduled 2/7, but I am VERY encouraged by the results. I am using O2 in fewer situations, and fell much much better. I am optimistic for the first time in a very long time. My chiropractor, Dr. Daniel Serpentelli, is pairing laser…

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Wizard,

I suspect you’re going to see all sorts of replies here. I have been evaluated twice, going to be evaluated again soon. My understanding is that each transplant has their own criteria. I live near Tampa, Tampa General has a good transplant program, they have turned me down each time.. But they have said come back regularly…

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This is my opinion, and shared by my pulmonologist. The efficacy of OFEV and Esbriet is marginal at best. We chose Esbriet as my treatment medication. Esbriet. Has games a generic form for about a year, which I switched to immediately. Great savings! Then Mark Cuban started his CostPlusDrugs. I am now getting my generic Esbriet through…

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I am always curious why Drs. Prescribe OFEV. My opinion is side effects are worse than Esbriet, which I have been taking for 3-4 years.

Hers is info that my tip the scales in the drug choice: I just ordered Pirfinidone (generic Esbriet) from CostPlusDrugs in the US, 90 801mg tablets for $199 plus shipping $5. No, that is not a typo. If I…

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Peggy,

I am awaiting delivery of some “D” sized O2 cylinders and a regulator that will provide up to 6LPM, it will do either constant flow or pulsed, user selectable. My calcs show it will provide a little over an hour O2 at 6LPM constant flow. I had to know my stuff to get my O2 provider to believe me that it would help, fortunately I do. This…

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Steve,

At least the -301 arm is in the US, that is the one I am currently enrolled in. Currently paused, about to withdraw.

I am enrolled at Tampa General Hospital.

I thought -305 arm was IS also, but it’s been a while since I looks at that one.

Peggy,

by Phase 3, I am referring to the phases of clinical trials. Trials progress from Phase 1 through 3, Phase 1 being very early, Phase 3 being final phase. This process is exceptionally long and I am not an authority, but most Phase 3 trials are a year long, it can take years to get suffficient enrollment on top of that. I am not…

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Peggy

I was referring to this column posted in PF News

TETON PPF study of nebulized Tyvaso enrolls first patient (pulmonaryfibrosisnews.com)

I was diagnosed with IPF in 2019, with the attendant decline in my health since then. I am throwing every tool I can find at the disease to preserve my quality of life as much as possible. One of those…

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DR. Maia recently posted a column indicating the first patient has enrolled in the Teton/Tyvaso clinical trial. There i s sister trial that appears o be the same, RIN-PF-301. I have been enrolled since 3/23, and I know other members have as well. If you’re interested in Tyvaso, search clinicaltrials.gov for this one also, you might be able…

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<div>A lot of us moitor our SPO2, some of us are even obsessed with it! I have used this ring for3 or 4 years, and find it to be a highly informative device in managing my IPF. It is not perfect, the silicon ring wears out and breaks (i use mine a LOT). But therir customer service is great. I just ordered my 4th,. Purpose of this post… Read more

Per clinicaltrial.gov, this is phase 1b/2a:

Study Record | ClinicalTrials.gov has info on this trial.

I am currently on my 3rd clinical trial. My understanding of the trial process is it starts at Phase 1, and proceeds to phase 2 then phase 3. The early phases are as much to test safety as they are to test efficacy. I am on my 3rd Phse 3…

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I think that is a question for your physician. It is a Phase 3 trial, to me that indicates it has shown promise. Personally, I am throwing everything I can at IPF to slow it down. My personal goal is to make to the open label so I can use it in my battle. I also have about 6 months to go. Good luck!

Yes to what Adele said. I am on my 4th trial, never new what I was getting, that’s the standard procedure. On trial did have an open label extension, in which you do get the study drugs. That trial was cancelled due to lack of drug efficacy. Currently on the Tyvaso trial, mostly in hope that I will make it through the trial and get to the open… Read more

Mark,

Do you take the 2000IU all at once or multiple times daily?

After much consultation with my Pulmonologist, I began a daily regimen of 10mg Prednisone in October 2022. I found it to be really helpful  in my daily life and energy level. As part of the consultation, my Pulmonologist recommended a daily Vitamin D supplement, as apparently Prednisone can effect Vitamin D levels. A few weeks ago, I was… Read more

Emily,

May I ask: were you prescribed Tyvaso to treat pulmonary hypertension? I am curious.

Also, I am about to start a new thread on the following.  I too have been on 10 mg of Prednisone, perhaps for 3-4 months.  I found it to be really helpful to my general well being. a few weeks ago, I noticed feeling extremely lethargic, borderline… Read more

I am being evaluated for participation in the Teton (Tyvaso) study.
&Manzurul: did you mean to say that the side effects are noticeable?

Pete

Corgilover,

I get a bit of stimulation/energy boost when I bump the dose. So for normal, day the 10mg is fine. The increased dose is my “turbo”. And yes , my doc is OK with it. He and I have had an ongoing discussion, and we have jointly come up with this plan. I am very fortunate to have found a doc that listens and works with me.

I have had good results with Prednisone. Earlier this year I started taking 40 mg/day for events that required energy on my part (travel, family visits, etc).  While it greatly helped my energy level, I felt jittery and definitely had trouble sleeping.  But I felt the benefits outweighed these effects. My pulmonologist was resistant to putting… Read more

I have been enrolled in PRM 151 for around 18 months, I had progressed to the open label portion of the trial, where I was being given the drug.  I had my second to last visit yesterday, as the trial has been cancelled.  Reason given for the cancellation is lack of efficacy of the drug, my experience backs that up, I haven’t felt much different… Read more

David,

The biopsy did tell you what kind of PF you have. IPF: Idiopathic (no known cause) Pulmonary Fibrosis. The importance of this diagnosis in the US is that it allows patient to be prescribed one of two drugs to slow the progression down.
My biopsy was smooth, I should have done it sooner.

15 years is awesome, and let the be an informative piece of information to newcomers to the group. If your pulmonologist is indicating a 2-4 ( or more commonly 3-5) year life expectancy, it is time to find a new pulmonologist. That data predates the approval of OFEV and Esbriet, which have been available for a long time. We regularly see people… Read more

At the beginning of my IPF journey, I was an extremely fit human, riding my bicycle an avg of 5000 miles per year. When in the hospital recovering from my lung biopsy, the respiratory therapists were impressed with my lung volumes. When I shared this with my pulmonologist on the follow up visit, he said my volumes were indeed great….but volume… Read more

Linda, I just searched the forums for eperisone and came up empty. Can you share what you are referencing?

I want to provide an update to my previous post on cost of generic Perfenidone.  I recently submitted a new order to eCVS Specialy and was pleasantly surprised when I received the bill.  Full charge for this prescription was $5,700.92 (down from $9130/58 last month).  My Medicare share $285.04 (down from $456.52).  This is closer to the cost… Read more

I posted this on another thread also. I received my first order of generic Pirfenidone today. Yes, it’s cheaper than Esbriet, but I was hoping for more. In ballpark figures, Esbriet 90 day supply of 801mg is around $$11,500, my share on Esbriet $550. Generic Perfenidone cost is $9500, my share $450. Glad to save $100, but even the generic is… Read more

My first order of the generic will be here this week, from CVS Specialty. Imagine my disappointment when my copay only went down to $440 or so(from $550), on Medicare. The full price is over $9K, compared to over $11K for brand name. I mean, I will take the savings, but I was hoping for an lot more.

Sylvio,
I don’t have any input regarding the effects of altitude on life expectancy of IPF patients.

I do have input on the “3 to 5 year” life expectancy however. The 3 to 5 year expectancy data is very dated. My IPF diagnosis was provided to me by my pulmonologist, and confirmed by 2 additional pulmonologist. All 3 of these doctors… Read more

@@lnour
I too am very interested in stem cell therapy as an IPF cure. When I was participating in the Galapagos GLPG1690 trial, the clinic that I was working with had someone drop out of the trial because they were pursuing stem cell treatment. The clinic echoed the thoughts that Ben posted.

There is a clinical trial currently underway on… Read more

We all have PFTs done…..I like this youtube video explaining PFTs

Charlene,
I too have seen the Tyvaso information and it is on my radar too. It looks like there is a clinical trial evaluating the efficacy of Tyvaso in treating IPF about to start. As I think you have previously noted, your probably not eligible to participate, as age is one of the criteria for exclusion. The drug named in the trial… Read more

Well Ron…there isn’t much I can add to THAT other than ot second that emotion (yes I am quoting Smoky Robinson). I am pretty hopeful and thankful as well, but we all have days…I will print you post out…sometimes we need a reminder to be thankful. That was really nicely written.

Bernard,
I would like to address the concern you raise about only seeing your consultant once per year, and when you are able to see them, they don’t have time to go into depth on your health concerns. As patients, we all wish we could spend more time with our doctors. In reality, the practice of medicine is a business, be it private… Read more

Ron,
My post was in response to another post by “Anonymous” which has since been deleted by the mods. This post did indeed reference that this person had been cured using the herbal supplements provided by WEI. I was pretty sure the mods would delete that post and was hoping they would delete mine to, because without that post in… Read more

@Anonymous – I am a wise guy, and I had concocted a tongue in cheek answer to your post, but I decided not to soil the dignity of the forum by posting it. Anonymous? Inactive? Miracle cure? hmmmmmmmm

Jill,
I am on Esbriet, and also fight nausea. I haven’t heard of BRAT, thanks Thom I will try that. I have for years been on a pretty low carb diet (not much in the way of bread, potatoes, rice) but find myself craving bread of late. And saltine crackers…they seem to settle my stomach. And ginger candies…I am amazed at the different… Read more

Pam,
Esbriet received its FDA approval January 11, 2017, OFEV in 2014. Both pretty recent. My pulmonologist told me the 3-5 year expectancy is a bit of an artifact from the days before either of these drugs were available. As you can tell from this forum, there are very many people that have far exceeded that expectancy. Keep educating,… Read more

Manzurul,

I too will be 67 in a few months, I was diagnosed last year, started Esbriet September or so.  My last two visits to my pulmonologist have shown steady gains in my pulmonary function tests.  Is it the Esbriet? Is it the fact that I have kicked my exercise routing up a couple of notches?  Is it the Galapagos GLPG 1690 clinical trial I… Read more

HI Randy,

See the messages above.  I was a participant in GLPG 1690, as were a number of forum members.  It has been cancelled. Some info here:

Galapagos and Gilead Discontinue ISABELA Phase 3 Trials in IPF | Business Wire

I have my exit screening scheduled for Monday, I will post if I learn anything.

Pete Besio

Yep, i got the same call.  I will be meeting with my trials nurse on Monday, if I learn anything of value I will post it here.

Hey Mark,

This is a cool post. Pursed lip breathing was part of a pulminary rehab program I participated in.  I did find it helpful, but didn’t have the discipline to incorporate it into my daily life.  I was previously unfamiliar with the Buteyko Method, thanks to Charlene for posting that link.  Ever heard of the 3 6 5 method? I just read… Read more

Carol Libby,

I wasted about 2-3 months trying to qualify for assistance only to end up empty.  Same story as yours.  We aren’t rich, but I have recently retired, my wife is about to.  The $520 per month wasn’t part of our retirement plan!!

I am pretty sure that those that prescribe medications have no idea of the financial implications.  I… Read more

Steve,

I hear you on the fatigue and nausea.  Have you tried Ondansetron (Zofran) for the nausea?  It has helped me.  And there are ginger candies from “The Ginger People” that are pretty tasty and seem to help a bit.  I fight the fatigue factor too, but have learned to embrace the afternoon nap.

 

I agree with Michael about checking with… Read more

Char,

So if i made your day a little better…that made my day a little better.

When I was younger, my lottery fantasy was…when I won…I was going to start a business.  My plan was to build that business with people that I met in my daily life that exhibited that attitude that we all want to be around.  You know, the server in the… Read more

Hey Char,

I resolved very many years ago to stop watching any news network. Does wonders for your outlook on life.

I pay very close attention to the space industry.  The things they accomplish on a regular basis are awe inspiring and uplifting.  I do have the good fortune of living in FL, so I occasionally head over to Cape Canaveral to watch… Read more

Hi Char,

Have you tried a phone app? I use one called Medisafe, but I am sure there are plenty of them.  The app allows me to enter my meds and sets schedule reminders.  Not sure if you can set different reminders for each med, but you might.

Take care,

Pete

Doug,

I feel your pain on the Esbriet expense, my copay is about half yours and it stings for sure.  Regarding the Galapegos study, the clinic that I am attending seems to feel that the study medication is having a positive effect on participants.  I am not an expert on placebos, but i think by definition a placebo should have no effect on you,… Read more

Mark,

Let me address the most important thing first: Mal’s tolerance for beer!  I have been concerned about that since he first posted about it…not that I like my beer…..or maybe I do.

Second, I chose Espbriet over OFEV because I was more concerned about the GI effects that I have heard about with OFEV.  I am an avid bicycle rider, I ride… Read more